A Mom and Grandmother's Perspective

 

A few days after Holly and Ty announced their pregnancy, Holly went to her first prenatal appointment.  It was then that she had blood drawn as part of a routine prenatal check.

A few days after having her blood work taken, she texted me at 11:30pm one night.  She said all of her levels were normal but she could see online, she had tested positive as a Cystic Fibrosis carrier. As I awoke in the middle of the night to read her text, I felt a wave of fear come over me.  I thought, "The test has to be wrong...."  I didn't know a lot about Cystic Fibrosis at the time but I did know it was a very serious disease, one I knew was life-shortening.

I calmly sent a text back and said, "Hollo, don’t worry the test must be wrong."  

I truly thought there must be a mistake.  However, by 10am the next morning I was notified the test was not wrong and my son in law must be tested to see if he was CF positive. 

Hollo and Ty tried to stay as positive as possible.  They kept the news to our immediate families.  The doctors offered us hope by saying the chances of Ty being a carrier as well were very small as one in 30 Americans are CF carriers, but the chances of you marrying someone who is also a carrier is quite small.  We all prayed Ty's result would be negative and we could put this fear behind us.

It was around 2:00 in the afternoon, 14 days after Ty had his blood work taken, when I realized I had missed a call from Holly.  I had known they would be receiving his results soon.  As I entered my office, my oldest daughter looked at me so pale and said "Mom, Hollo is trying to find you."  I immediately knew why.  I wanted to scream because that seemed like the only reasonable thing to do.  I could not believe this was happening to my sweet girl and my son-in-law, my heart broke a thousand times over within me.

I called Holly back.  She could barely speak but I knew Ty's results must have come back positive.  I told her I would be over to her house soon.

I remember calling my husband on the way over to see my sweet daughter and son in law and we just cried so hard together.  We felt guilt that was so profound.   How could one of us have given our beautiful daughter and now granddaughter this gene?  How could we not have known?  In some odd way, we felt responsible.

During Hollo's pregnancy, as a Mom of the Mom, I tried to help her celebrate every moment and instill in her the confidence that she could face anything.  I tried to be positive around her but also grieve with her when she need to grieve.  

Two weeks after Caroline was born, Holly called me and asked if I could meet her and Ty at the pediatrician's office.  The office had called to schedule a last minute appointment to review Caroline's Newborn Screening results.  I wanted to have hope, but I think we all knew what we feared most was happening.  

In the doctor's office, as he spoke the words of Caroline's diagnosis, it became clear to me that my sweet girl knew within days of Caroline’s birth her baby girl had CF.  She listened to the results with a strength I had never seen in her before.  She sat upright, and brave-faced, ready with questions and anxious to learn how to help Caroline.  

Of course, as prepared as we thought we were, Hollo, Ty and our families were still experiencing  shock.  As a parent of the parent of a grandchild being diagnosed with a disability, I selfishly sobbed for 3 days.  

However, within a week, what I thought was the end of world for my daughter and son in law, I realized was not.  They never missed a beat.  They stepped right up and said, "Tell us what to do to help her and we will do it."  They did not have a day to process the diagnosis.  They began treatments immediately.  They started giving her medicine, going to Dayton Children's for five hour doctor appointments, watched their baby girl get X-Rays, blood drawn, swabs and exams.  Anything they could do to help Caroline, they will do it.  We are blown away by their strength and dedication daily. 

 

I can say without a doubt, my daughter Hollo is the amazing Mom I always knew she would be.  But I have to thank God for my son in law.  During this journey, he has taken such care of my sweet girl.  He has given her immeasurable love, support and understanding.  He made her rest, eat, and laugh during some of her most difficult moments.  He is the most caring husband I could hope for my daughter to have and the most amazing dad to my granddaughter. 

 

Thank you Dear Lord for giving us this beautiful baby named Caroline Rose.  We always said if she had CF she would be "more than CF" and she most certainly is.